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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Table 5.1 - Distribution

Table 5.1 - Distribution of Informing Families Questionnaire to Professionals Discipline n=Times listed in Sample Distribution Parent Size Questionnaires Informing Families Consultation and Research Report Area Medical Officer 1 50 Via Principal AMO’s Audiologist 8 50 Audiological Society of Ireland Cardiologist 3 50 Irish Medical Directory Consultant (non-specific) 14 0 Not applicable Community Nurse (RNID) 1 50 An Bord Altranais Doctor (non-specific) 4 0 Not applicable Dermatologist 1 0 Not applicable Endocrinologist 1 33 Irish Medical Directory ENT Consultant Eye Specialist 2 50 Irish Medical Directory (Ophthalmologists & Optometrists) 6 50 Irish Medical Directory Genetic Counsellor 7 7 Irish Medical Directory Geneticist 4 Irish Medical Directory GP 4 120 Irish College of General Practitioners Liaison Person 3 0 (Not discipline-specific) Midwife 9 120 Irish Nurses Organisation Neonatologist 3 17 Irish Medical Directory Neurologist 25 37 Irish Medical Directory Nurse (Neonatal) 12 26 Irish Nurses Organisation Nurse (Paediatric) 120 Irish Nurses Organisation Obstetrician/Gynaecologist 11 120 Irish Medical Directory Occupational Therapist 4 50 Association of Occupational Therapists of Ireland Oncologist 1 0 Not applicable Paediatrician 124 112 Irish Medical Directory Parent 3 0 Not applicable Physiotherapist 6 50 Irish Society of Chartered Physiotherapists Psychiatrist 4 50 Irish Medical Directory Psychologist 33 120 Psychological Society of Ireland Public Health Nurse 4 50 An Bord Altranais Radiologist 1 50 Irish Medical Directory Social Worker 4 50 Individually contacted Speech and Language Therapist 7 50 Irish Association of Speech and Language Therapists Surgeon (non-specific) 3 0 Not applicable Trainee Obstetrician/Gynaecologist 8 37 Royal College of Physicians Ireland Trainee Paediatrician 48 Royal College of Physicians Ireland Ultrasonographer 0 45 Individually contacted by telephoning all maternity units 85 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report 5.2 Parent Questionnaire Survey Results Response rate 584 questionnaires were sent to families of children with disabilities between the ages of three and six. 185 questionnaires (31.68%) were returned. As one respondent indicated that their child’s diagnosis was received outside the Republic of Ireland the remaining 184 questionnaires were analysed, which gives a final response rate of 31.5%. It is not possible to comment on the demographics of non-respondents, as no specific information about the families who were sent the questionnaire was made available to the researchers due to ethical considerations. Notes on data reporting Throughout the following report (for both parent and professional questionnaires) identifiable information such as names, rare syndromes or recognisable locations have been changed or sorted into more general categories to protect anonymity. For the parent section of the report the percent rate reported for the answers to each of the questions is expressed as a percentage of all 184 cases rather than the percentage of only those who responded to the particular question, unless stated otherwise. For ease of reading the term ‘parent’ is used in this report to indicate all respondents including adoptive parents, foster parents, and grandparents. Tables are presented with totals at the end, except where multiple responses were possible, and the data within tables is presented in alphabetical order. Where the analysis of data in the report required it, specialist medical and/or statistical advice was secured. 5.2.1 - Child and Family Characteristics Relationship of respondents to child As can be seen in the table below, the majority of questionnaires were filled out by mothers. When taking into account foster mothers and adoptive mothers the percentage comes to 89.7%. As 20 mothers and fathers completed the questionnaire together and one grandmother and mother completed it together, there were more responses recorded to the question of ‘relationship to child’ than the total number of questionnaires received. Four families did not specify the relationship between the respondent and the child. Table 5.2 - Relationship of respondent to child Relationship to child n= Percentage Mother 163 88.6% Father 35 19.0% Adoptive Mother 1 0.5% Foster Mother 1 0.5% Grandmother 1 0.5% Missing 4 2.2% Total 205 Region Parents were asked to indicate the province in which they had been living when they received their child’s diagnosis (to take account of the fact that families may have moved since their diagnosis was received). The largest group of respondents (exactly half) came from the Leinster region, in keeping with the location of the largest population of the country, which is centred around Dublin. The smallest number of respondents came from Ulster. Table 5.3 - Region in which respondent was living when diagnosis received Region n= Percentage Connaught 25 13.6% Leinster 92 50.0% Munster 49 26.6% Ulster 6 3.3% Missing 12 6.5% Total 184 100% 86

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